This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Ditto what Skylark said. I've been gluten free now for over a year and while it's a challenge to have 3 of us that are gluten-free (me and our two kids) and my husband not gluten-free, it can be done. I also suggest that you do not keep regular flour in your kitchen. It does get everywhere. When my husband wants baked goods, we buy them. I only bake gluten-free in our kitchen.
Your own pot or two and a toaster is necessary. We have our own butter dishes too. One gluten-free, one not. "Globbing" the jelly, mayo, etc. which was suggested is what works for us. No dipping.
Potlucks aren't as bad as you might think. This way of eating just requires some planning. I bring a tasty gluten-free dish to potlucks and if I don't think I can get other sides like fruits or a salad, I bring my own. I also bring my own bread just about everywhere.
Just give yourself a break and realize there is an adjustment period, emotionally, when you go gluten-free. As my body was coming down off the gluten, I even had some psychological affects (very temporarily) where I would break out into crying jags because shopping was so stressful or my husband went through all the trouble of scraping the grill, using separate utensils etc only to put our meats in the same plate with juices mixing (so his gluteny sauce was now all over the bottom of my steak. Seems like a million years ago now. But I had a few meltdowns in the early weeks of gluten-free.
I just want to encourage you that it DOES definitely get better. Once you have the shopping down, once you ferret out all the places you can eat out and what you can eat, once you get your groove going with potlucks and friends have adjusted to your health issues...it starts to feel less oppressive.
Even if you are a cook-from-scratch type like I was, I highly recommend you locate foods that are pre-baked, pre-cooked, etc in your area and gluten free. You'll get caught off-guard, busy, or sick and it's a great comfort to say, "Grab that soup mix out of the pantry - all I have to do is add water and it'll be ready in 15 minutes." Shelf stable rolls you can throw in the oven, along with as salad, and you've got a meal. (BTW I just did this yesterday. Our daughter was down with the flu and I'm half-sick myself).
Sounds like as RoseTapper said, you need to grab an article from Dr. Fasano and show your family...you have Celiac. The end.
I think people look at the gluten-free diet and see how restrictive it is and how hard it is going to be on you and everyone around you, that they think they are doing you a favor...maybe you CAN eat it - try!! Try!! lol
I'm 43 and have met a lot of resistance throughout my life from people and my choices (good ones by the way). What I see now, that I didn't see 20 years ago, is that if you make decisions and are very sure about what you are doing and NICELY don't give people room to insert themselves into your decisions, they eventually quit trying. When I've had the most troubles with family & friends is during that "figuring something out" period where you are unsure or don't sound convicted or are still looking for answers to something. Then they come flying out of the wood work. There is nothing people love more than telling someone else what to do LOL
Hang in there. Stick to your guns and just realize...it's your decision and make it. They don't have to suffer the effects of what you do or don't put into your mouth - you do. People who love you really don't want to make you sick.
I'm just SUPER careful when I eat out. I ask a lot of questions in my nicest voice, smile a lot, thank people for being patient with me, etc. If I see anything that doesn't look quite right, I ask more questions. So far I have not been glutened that I am aware of and I've eaten now in about 10 restaurants since going gluten-free. I avoid like the plague any place that does not advertise gluten-free foods because it means they have zero understanding of the problem. My thought is that while mistakes can happen anywhere, the odds are lower when they understand cross-contamination etc.
I hope you are feeling better. I sure feel for you.
At first oats bothered me, even Bob's Red Mill. About 6 months into being gluten-free, I was able to add them back on. I mostly use them to make treats (Cookies). I make the no-bake type with the peanut butter, added nuts, coconut, etc. Quite good. Kids love them and it slows the absorption of all the sugars because of the proteins & oats.
I'm feeding myself and 2 kids gluten free and they eat like Kings, seriously. There are so many gluten-free subs that are out there. You just have to know what to buy.
Udi's bread is great. I make grilled cheese sandwiches with them and serve Pacific Foods Tomato Soup with them (I buy the soup at Winco in our are a- discount store).
The kids love Annies gluten-free Mac n Cheese. I get them from an online store on Auto-Ship.
They get chocolate cake (pamelas) and ice cream.
Tinkyada's pasta is wonderful. If you make Lasagna without cooking the noodles first it comes out nice and firm.
That's just the subs for regular gluteny foods.
As other posters mentioned, there are lots of gluten-free foods. But if you are missing the normal stuff, this can help.
One thing I did to make life easier, is to buy Jules' Gluten Free flour, which can be used JUST LIKE regular flour in most recipes. I make brownies, pineapple carrot cake, you name it. She also has e-book recipes.
Celiac is just like anything else...it has to be learned about and managed. Life is not over because gluten is out. There are many restaurants that will accomodate gluten-free diets too.
If I had to make a guess...the reason you are discouraged is that you have not educated yourself to the degree you need to and found the substitutes you need, diet wise, to feel normal. If you don't eat, you are going to feel wacky. Not having support from others is difficult, but not having support for yourself is worse. You aren't spending the time to learn how to feed yourself sweetie. Do yourself a favor and invest the time. We've all been down the same road. Hon, I feed 4 people gluten-free DAILY and have been doing it for the past 8 months on a budget. It can be done. I promise.
I've had ups and downs but overall my health is going up...and as far as I know, I have not be "glutened" since starting the diet back in October of last year.
One thing that might encourage you is that I experienced a bit of what you have. The initial "high" as you called it from going off gluten - yep - experienced that. I think what happened is that once all those antibodies quit swirling around, I felt better, but then I suddenly noticed other things I was reacting to. I had to give up soy, corn and dairy for awhile. I have been able to add dairy and corn back in (my intenstines must have healed enough) but not soy. In fact, I discovered that soybean oil made my joints swell like crazy. One afternoon I forgot about the soy and ate some Best Foods Mayo (first ingredient soybean oil) and the joints in my hands flared. My right hand, within an hour was so painful I couldn't close it past a claw without excruciating pain. It took a week to completely clear up. I am ok with soy lecithin but not soy or soy oils. I think they are out forever. I didn't realize I had an allergy to it until I went gluten-free. Go figure.
I have had waves of fatigue. The healing process takes time. I do notice that I feel the best when I eat a primarily whole foods, low carb diet. It's probably because my pancreas has taken a hit over the years. I was in pretty bad shape in October before going gluten-free. If I stick to meat, green veggies, a little fruit, and not too many potatoes, eggs, etc. I feel best.
If you are really at your wits end and feel awful, the elimination diet might help you. Then you can discover if you are reacting to some of the top allergen foods- soy, eggs, dairy, nuts, etc.
Hang in there. Feeling awful is information that you need to follow up on. If you're not deficience in vitamins, I'd start looking to food sensitivities.
We're done some disaster preparedness also. We started it about 5 years ago and of course we bought...get this...buckets of wheat! AHHH. And now we know that me and our 2 kids have to be gluten free. Oh well. They are there for somebody, along with all those soups etc.
There are some things you can stock up on, even gluten free. I highly recommend you purchase Ener-g bread. It's a rice/tapioca loaf (there are varying types) that will keep a year, shelf-stable in it's packaging. We buy ours in bulk from Vitacost online.
You can also stock up on canned foods -- meats, fruits, vegetables, etc. We found a supplier online to purchase ground hamburger. You can purchase freeze dried items too like potatoes, eggs, etc. that keep 10 years at least. Lots of online suppliers for that as well. You can store juices, candy, etc.
One aspect people often do not consider is their water needs. You can store water in 1-50 gallon containers or barrels but water is heavy & takes up a lot of space and it's not always practical to store more than a couple of weeks worth of it. You can, however, buy water purifiers - pocket type like Katydyne (Check that spelling -I'm sure it's wrong). We personally use a Berkey and use it for our water filtration all the time & have extra filters in case of an emergency. Since you live in hurricane country and often have warning, a WaterBob is a great item to have for as many bathtubs as you own in your home. They are a bladder that sits in your tub and you fill it with the bathtub spout and holds a LOT of water.
For disaster prepardeness, another item to consider is a 72 hour pack you make up yourself with water, food, medical supplies, medications, clothing etc. We purchased rolling backpacks in case it was a grab-n-go situation and we didn't have the ability to shelter-in-place and use our stored up items.
I feel for you. Most of us moms here can remember (it doesn't feel like that long ago) what it was like to put up with the line crossing behavior of our teenage "friends". It seems a universal problem with teenage girls especially. So many of them think it's their job in your life to tell you what to do because that's what they want.
I've got a couple of kids now - one son in 2nd year of college - and a daughter who is almost 10. A little Mom advice here...learn now how to surround yourself with people who respect you in life. You'll be a lot happier. If a friend cannot support your food choices (I mean who cares what you eat - gimme a break?) what else will she attempt to force on you as the mood suits her? This girl is truly not your friend.
The kind of friends you surround yourself with will lead to the type of man you marry. It's a life skill to learn to surround yourself with supportive, kind, caring people. If you can learn it now at 13/14 years of age, my dear, you are sooo ahead in life. You'll have friends that last a lifetime and then you'll have a great husband someday and then your kids will thank you.
Hang in there and stand your ground. If she doesn't back down, face off with her and tell her what you think of her bullying behavior. There are girls out there that would love to have you as a friend. Go find them
It sounds like you are having an auto-immune response. I think the biggest factor in your entire story was the part where you said you cut out gluten and you felt amazing. 'Nuff said
You have a decision to make and the right answer is different for everybody. You can go read my medical history on my "About Me" page. I was one of those people who did not have the luxury of medical testing at any point in my adult life when I was having the most severe health problems. Last year, when I finally made the gluten connection after years of living on Atkins to control symptoms, thinking I had a carb problem not a gluten problem, I didn't have any insurance. My husband had just lost his job in June. It was October and I finally had the "aha" moment. My daughter and I both went gluten free and within just 2 weeks I felt different and so did she. Within 3 months I could feel the life pouring back into me.
I think we know our bodies pretty well by a certain point. What I hear most from you is what I was experiencing myself...this feeling like your body is revolting against you and shutting down on you. I went off the Atkins diet in 2008, at a particularly stressful period after my mom had a stroke, and it was only 1 year before I had trouble going up and down stairs. My muscles HURT. They wanted to give out on me. The next year was like hell on earth. I was having heart palpitations, symptoms of vitamin deficiency (despite super dosing), intolerance to heat, neuropathy (tingling) in my lower extremities, chronic fatigue, you name it. I really thought I'd developed Fibromyalgia. By the last summer I was starting to see signs of MS.
The determination you have to make is this...can you cope with being self-diagnosed? In my case, I didn't have a choice. I had to do something. I knew, deep-down, that I was dying and if I didn't do something, I was going to have a heart attack or my thyroid was going to shut down --- something catastrophic was on it's way. I couldn't wait any longer for the money to have a doctor tell me what was wrong with me.
If you can live with self-diagnosis, I suggest you change your diet NOW. It wont' happen overnight but within a few weeks, and then a few months, and then at 6 months (my current milestone), it's amazing how much life can change in such a short time.
It really sounds to me like the antibodies your body makes against the gluten is attacking different parts of your body. You may find that your body even heals from some of it's allergies over time. I was allergic to corn at first. Now I can eat it just fine. I am still allergic to soy , but I think I have been for years and I just didn't realize it. Dairy was a problem for a while, and as long as I don't overindulge I'm ok now. It just takes time for the villi in the intestine to heal.
I hope you find the answers and resolve you are looking for...however that works best for you.
I second the others who are encouraging you to try to gain more information through testing & seeing the doctor. I'm all for alternative/natural medicine & food solutions. I use them for myself and family. The beauty of going for the testing is that if you can find out what is actually out of balance or wrong, then you'll have the information you need to possibly find an exact solution - possibly a more natural one than the medical community might normally offer. Information doesn't mean you have to do things someone elses way. It will give you options though. You would have choices, potentially, you don't currently have. Right now it's like flying blind. It's hard to make any choices at all without the right information.
I hope you can find out what's causing the problems & then find the solution that will work.
You got some great answers. I just wanted to suggest that if food sharing is a major thing at work, you can still participate. Everyone loves dessert. That could be your contribution. I can highly recommend Pamela's chocolate cake mix & chocolate frosting mix. Together they are divine and I haven't heard one peep of complaint from the gluten friends I have when I serve it. They ooh and aah. Pamela's Vanilla Cake Mix makes a wonderful pineapple upside down cake. Cheesecake is gluten free if you make the crust with gluten free oats or gluten-free Flour. I made the Banana Cake recipe from Jules' Gluten Free and oh my - it had a ton of bananas in it and it was delicious. I take it upon myself in potluck situations to always bring something that I can eat that everyone else will like. If it's not dessert, I'll bring a gluten-free lasagna (Tinykada's noodles are great) or something along that line. No one can tell the difference. Another great option is gluten-free pizza, made into squares and topped like a Papa Murphy's Chicken Garlic. I'm allergic to soy so I love making things I know are gluten-free and soy free.
I know social situations can be difficult and sometimes it's difficult to keep having the same questioning conversations over and over. I'm putting my vote in with those who said to engage the person who is trying to be nice in conversation. Saying things like: I'm just getting into making gluten-free desserts, how did you do this cake?...and educating people while you discuss in a friendly way goes a long way. It's not just about us. In the next few years more and more people are going to find out they or someone they know is Celiac or Gluten Intolerant. Every little bit of education people get will make their life or someones life they know -- easier.
I do know what you mean. The labeling is tricky and not allowing people the most accurate information so that they can make informed choices about their health. I like the idea of certified at <20ppm, <10ppm etc.
Looking back to last October and how sick I was then...I think I was dying...I don't know if I would have been able to cope/get through the gluten to gluten-free lifestyle without those gluten-free support products. I lived on a Paleo/Atkins diet for years and felt wonderful. 2 years into glutening I was so sick I almost couldn't function. I tried going Atkins/Paleo a month into gluten-free and my body revolted. It's taken me five months of strict gluten-free eating to be able to tolerate it again and really feel good.
Back between October and January, when I went from feeling like I was dying to being human again, I relied heavily on Udi's, certified gluten-free grains etc. It was a transitional alternative I'm grateful to have had. Would I have healed faster grain-free? Maybe. But until my body could handle it, the highly diminished glutens gave me a chance to get better.
The people I feel for most in the bad labeling arena are those who react to gluten violently. I will feel like I have the flu because it's an antibody attack much like you feel you're coming down with something but my reactions aren't as bad as some.
Unfortunately, food labeling is just one thing that stick in my "craw" so to speak. The additives, colorings & chemicals that they allow (when there are safer alternatives) & people have NO idea what they are eating are almost criminal. One thing about gluten-free eating...the simplicity of the food HAS to be better for health whether a person needs gluten-free or not. For proof, just compare labels. Compare a box of Betty Crocker or Pamela's gluten-free cake mix to the normal Betty Crocker cake mix...amazing.
Sorry it took me so long to reply. I've been off the board here for about 2 months. Busy!
Unfortunately, I have not located a gluten free shake mix (yet) that I can use. The reason is that I'm highly reactive to soy (except soy lecithin). There are mixes out there I can try but with my husband still unemployed, and not used to our normal income, I am reticent to invest $20+ on something I might hate. I need to do my research because I prefer it is also low carbohydrate.
You asked about Paleo-- yes---I'm back to that. When I first went gluten-free in October I could not handle proteins very well and gravitated more toward a balance of gluten-free grains, meats, veggies & fruits. It has taken 5 months of healing for me to be able to go back to the Paleo/Atkins type of diet. I've been on it a week now and I feel TERRIFIC. Someone posted in the Coping section about Candida and Gluten. Candida overgrowth was the first major health meltdown I had. It was in the 90s that I figured out that a lower carb diet (and if I ate grains make sure it was quinoa, buckwheat, amaranth or millet) healed me up. I never made the gluten connection until last October. Being on a meat/veggie diet makes me feel awful for about 3-5 days, then I receive a burst of energy and I feel healthy/normal again. I feel better right now than I have in 2 years (when I went off Paleo and was eating gluten & carbs again)
If I solve my shake mix dilemma, I'll post it to the Coping page.
I feel for you. As I was reading I couldn't help thinking of those people in the US, back in 19th & early 20th centuries who had TB and would move to the desert climates to improve their symptoms. They did so without modern technology to keep in touch with loved ones.
You mentioned in one of your later posts that you have a Candida issue. You know, one of the ways you can limit your gluten exposure is to eat a low carb/Atkins type of diet with whole foods. I controlled my symptoms for years (without realizing it) that way. I pretty much ate protein & veggies for the better part of 12 years. The only issue with this is that in resturants they sometimes season meats with gluten rubs/seasonings. I would think that for a hypoglycemic who is gluten sensitive you'd need to locate & keep on hand a gluten-free shake mix. I took them everywhere with me. I only had to add water. Nuts usually bothered me too because of cross-contamination (I used to think it was the carbs). There are lower carb fruits you might be ok with. Strawberries, blueberries, raspberries etc. Don't know if you've tried those or if symptoms flare from them.
If you go meat/veggie, the absolute necessity is to find a gluten-free salad dressing you like and keep it with you all the time. Then you can usually order a meat salad with no seasonings.
I just wanted to say I feel for you. I know it's a hard decision to make. It would seem that you decision to leave or stay is dependent on how much income you have to spend on shipping safe products to yourself from other places in the world - like perhaps the U.S.